[VickiParticipant]

Hi Maureen

He had the transplant in November 2012. Apparently his light chains started going up in February 2014 but they didn’t tell us as they thought it could be a blip so they had to wait for an upward trend! So he got nearly 2 years but really showing signs from now only.

It’s such a difficult thing to deal with because you can’t see what’s going on and most of the time he looks good. Sometimes more energy than me!, glad to hear that Ian’s light chains are down.mrevlimid seems to knock things well into touch. Colin’s like chains went down from 31000 to 17000 in one cycle, they were so surprised they had the results checked as they thought it was a mistake!

What’s the next step for you guys. Has Ian had a transplant?

Vicki

[VickiParticipant]

Hello eve,

Vicki here. This is a completely late post. I just haven’t been on here. This crap disease shouldn’t be allowed. I’m so sorry to hear about slim. I have read all of the posts on the thread and everyone has said it all. Gritty is an understatement. Best wishes to you

Vicki

[VickiParticipant]

Hi Andy

Vicki here, not posted for ages but often thought of you all. I’ve posted our updated to Maureen’s offtopic. It’s been interesting. So pleased to hear you are doing well and your pp’s are down so low. That’s absolutely great, brilliant news! That’s great for you guys. Is there any chance of a SCT?

So pleased for you and steph. Best wishes

Vicki and Colin who is now in bed as it’s the start of velcade treatment and he’s knackered!

Vicki

[VickiParticipant]

Hi Maureen

It’s me…..by chance I logged on tonight! We have had a really tough time. Where do we start. I posted way back in July I think when Colin’s light chains started going up. That was a real blow. But Colin seemed really well! Everyone kept saying it! Anyway we decided to try and enjoy ourselves in the hope that things might go back down. Needless to say it didn’t. I must admit I am the poster on this site and went through a real spell of being in denial! I feel bad as that’s so unsupportive of me!

Anyway we did a major decorating project which we’d already started and I’m rubbish at it so it was a tough challenge with Colin starting to feel more tired. We had hoped that treatment would not happen til the new year but September visit to the hospital said it needed to star. That’s when things got difficult. Firstly Colin had shingles so that delayed treatment, then Colin’s mum died at the end of September so we had all of that to deal with…..then we turned up at the hospital two weeks ago to do consent forms. I mentioned Colin didn’t feel all that well, turned out he had a temperature and viral infection. Two weeks of antibiotics followed.

Finally today we are back in the bandwagon with first velcade injection, chemo tablets and steroids. 5 week cycles. His light chains are 5600, with 16% myeloma cells in bone marrow. It has been tough today. I’ve been weak and just couldn’t come onto the forum. Last night I had a good cry and now feel 110% able to deal with it….which is rich seeing up not the one having all the crappy treatment. Colin has been a real star and I’m back into asking 101 questions at hospital but prescripted, as I remembered Helens advice that there might be times Colin doesn’t wnat to know stuff!

Here we are back then! How’s things with you Maureen? And all you regulars.

Best wishes

Vicki and Colin xx

[VickiParticipant]

Hi all

Well the appointment came and went….Colin hasn’t relapsed yet but had a biochemical change! Effectively it’s on the way but not here yet. Apparently Colin’s light chains have gone something like December 13 (normal 40), February appt 75, April appt meant 140, June appointment about 248 and we don’t know what they are this time so effectively they have been on the quiet creep since February. Apparently the bloods are all fine, apparently haematologist was exceptionally good :-). But I knew it wasn’t good when he started off with any bone pain?, any infections?…. All the standard questions. Anyway he said all bloods were ok but in Colin’s case he’s interested in the light chain score as pp wasn’t very high when he had 31000 light chains!

He has said SCT second time is unlikely but now the options are thalidomide, dex and cyclophosmahide or velcade injection and steroids. They hope it will come on slowly so treatment may not happen til after Christmas but maybe as early as September 14…..depends

We will see what happens…..all the best

Vicki and Colin xx

[VickiParticipant]

David best of luck with the op…..keep going you have the right mind set. You might as well whack the prostate condition and mm whiles you are at it……you are positive so be headstrong and get that positive outcome x

[VickiParticipant]

Congratulations Tom, so glad to hear you are doing well. Always good to hear good news stories. Keep it up. Good luck with your move Carole and very best wishes to those with upcoming sct…..as Tom says it’s very doable

Vicki and Colin x

[VickiParticipant]

Hi there,

Andy is quite right. There are many drugs out there and we had the very same conversation with our consultant today. The jury is out about sct and whether drug treatment is the better option. Mavis has been mm free for over 2 years I believe. My colin had an sct but he’s now on the brink of return and he only got from October 2012 to now…..so there’s lots of hope and lots of drugs. Sct is doubtful for Colin second time around so we have been given two options now….cdt or valcade, when the time comes. Drugs are aplenty so please try not to worry too much. You need to conserve your energy to help hubby….easier said than done I know,

Best of luck

Vicki and Colin xx

[VickiParticipant]

Hi David

Sorry to hear things were a bit rocky with the prostate, but glad to hear they’ve got it controlled….hope the hospital visit for the water will sort itself out. You and Andy seem to be enjoying yourselves….we must take a leaf out of your books!

Vick and Colin x

[VickiParticipant]

Hey all

Well done on your trips, so glad you were able to enjoy it 🙂

Vick and Colin x

[VickiParticipant]

Hey Craig, you sound like you have gone through the milk but glad to hear it’s all going in the right direction. Keep it up 🙂

Vicki and Colin x

[VickiParticipant]

Hi all

It’s very heartening to hear of your progress. 7 years remission seems an absolute age and well done you. All of the good news stories give encouragement, if a little wistful if Colin is on the way back after 18 months….he’s never done anything else by the text book so it’s amazing it seems he following the book on this one!

Good for you all and keep sharing your good news experience, it keeps us going 🙂

Vicki and Colin x

[VickiParticipant]

Hi Andy

Thanks for the encouragement. It’s weird because Colin has on the whole been very good of late. He has a few spells of tiredness but generally ok. Part of the fatigue is the worry about the results I’m sure! Colin reckons the consultant said that if pushed he’d say it was coming back because we were at the 18 month average. I don’t remember that but I was in denial at that point!

How are things with your bloods? Are the pps coming down still. You are a marvel, inspiration and a medical conundrum, all rolled into one.i expect you’ll reply at 2am if the dex effect continues.

Enjoy this great weather 🙂

Vicki and Colin xx

[VickiParticipant]

Wishing you all the best victoria. What I’ve found difficult is that I like to fix things and can’t damn well fix this condition, as much as I’d like to! Glad you have found some solid ground and very much hope your mums treatment starts to hit the condition!

Look after yourself too 🙂

Vicki and colin x

[VickiParticipant]

Hi Maureen,

Firstly hope you have a great holiday in Cornwall. Lovely whatever the weather!

It’s very odd Maureen, Colin has been better recently than had been for months. I wasn’t sure from the consultant whether they went up the time before and he hadn’t said anything or whether this was the first time they’d gone up. If it was the first time Colin did have a nasty chest infection when we went to mauritius so who knows it could have caused a blip. However because the consultant said it was a small rise but went on to say he was mentally preparing us? Then went on to say he probably wouldn’t have told us this time had it not been for Colin considering a back operation! I really don’t know but given that Colin has been in remission for 19 months we are preparing for the worst, however depressing that is!

Hope that Ian’s light chains stabilise. Is he on treatment? This is so hard for all concerned isn’t it but we have to keep going. Enjoy your holiday 🙂

Vicki and Colin x

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